My electro mapping and ablation experience!

Electro Mapping & Ablation Update

So I survived Jan 18th, lol.

I must say survived is a good description, although as I reflect back on my experience one month later the drama of the procedure is softening a bit.

My day at the hospital started at 10am, no food or drink since 11pm the night before, which is fine. Two hours later I was still waiting as others came and went from the waiting room. Kingston had a big ice storm the day before so ER was full of slips and falls and thus was overflowing into the pre-op prep area. My sister was driving 3 hrs to be with me and had booked three days off work so I was really worried they would cancel my surgery. They didn't.

At 12:30pm I was herded (no better way to describe it) into a holding pen full of people. It was straight out of a movie when a major epidemic hits a city centre. I have never seen so many people crammed into one room. I nurse quickly gives me one little sheet and a gown and says everything off and change into this and lay here. I had to try and hold a curtain shut and strip with a window wide open to the other side of the hospital....hope they enjoyed the show, lol.

My other half was with me as my sis was still in transit and my girlfriend was at home with my daughter (good friends are such a gift). I lay there for about 20 min then a nurse, very friendly, came and put in my IV. She could tell I was nervous and stopped to chat for a few minutes to reassure me.

About 1:15pm I was wheeled up a couple floors to the next holding pen in the cardiac wing. IT was FULL....to the point there wasn't any room for me and I was shoved into a corner between two people, my bed sticking out. Two grumpy police officers were 1 1/2 beds over guarding somebody for some reason which left an air of tension in the room to say the least. It was very surreal.

After 10 min a lady doctor around 40 or so showed up at my bed and introduced herself as the doc who would be performing the surgery. She is what is called a Fellow, a graduated cardiologist who then goes on to do two more years of study to become a full electro physiologist in cardiology. Her bedside manner was excellent and she was confident and knowledgeable and answered all my questions without any eye-rolling or hesitations. I asked her if her back got sore doing all these surgeries and she said she didn't mind, it was fun. That was a good sign at least. During all that (and the signing of the "waiver") my sis showed up.

At around 1:45 they shooed my two family members out to the waiting room and off I went to the next station. Pierre was going home to relieve my girlfriend of baby duty and my sister would be staying during the procedure.

I was wheeled to a room which looked like another prep area. They asked me to get off the portable bed and walk into the room and sit on the bed in there. "Ok" I thought, must be another prep spot.

The room was like a big doctor's office with shelves of supplies and stuff, the cupboard doors open. Stacks of books and papers were on a desk at the back and beside that, chairs to sit in. At the front were two computers on a desk. Beside my bed was a big machine that looked like a mini CT scan device, heart monitoring equipment etc. I was observing all of this and then realized that they were putting all the leads on me and laying me down on the bed. I said, “THIS isn’t where you are doing the procedure is it?” They (4 nurses and the Fellow) laughed and said “YUP”. I couldn’t believe it. I asked if they did all the procedures in that room and they said yes, even the complicated ones. I asked the Fellow who is from Scotland if she found this odd when she arrived to do her training and she said yes but that the hospital had state of the art equipment so not to worry. As she was saying this a nurse walked in with a coffee. Nobody wore caps or masks, they did wear X-ray vests. I wasn’t getting the 3D mapping, though they have the capability, as it was only supposed to be a basic mapping and ablation, so I would get the X-ray. Great….LOTS of exposure.
Yikes!
First was the freezing for the catheter to be inserted under my collarbone. That pinched like getting your teeth done. Ok, it hurt I won’t lie. I was VERY nervous which didn’t help so I guess my shoulders were raised defensively. As it turns out my IV had a kink in it and the sedation never got to me so as the doc was digging around in my vein I could feel everything and it hurt. After team realized the issue and unkinked the line, the problem persisted. I had pain radiating down my arm and in my chest. After about 10 min the doc gave up and said my vein was collapsed due to dehydration. Heck, they had instructed me not to drink anything. So all the catheters would have to be inserted through my groin, a little crowded I guess.
I was still very nervous and tense (stiffer than a board). The groin insertion didn’t hurt but I felt each catheter go all the way up and they hit nerves on the way. I had shooting pains down my leg and in my butt and some up my back. I mentioned this and she (the doc) told me that the vein lies near nerves. I, of course, could feel and then report all of this because I think they were saving money on sedation, lol, as I certainly felt as alert as ever. I felt each catheter enter my heart and each time my heart felt a little “heavier”, like it was being compressed. I told them my observation and they told me I was fine, that my blood oxygen level was normal. After what seemed an eternity, all five catheters were in and then the doc did something that triggered what felt like my lower chambers vibrating. Then she did something else and my upper chambers (or that is what it felt like) did the same thing. While this was happening I felt a little short of breath but I kept my eyes on the blood O2 level.

While they were stimulating my heart that is when the attending physician entered and became part of the action. He stayed at the desk with the computers from that point on.

As it turned out my case wasn’t to be as simple as suspected. So what was supposed to be a simple mapping and ablation turned into a 4 hr mystery tour. They had to go to drugs to stimulate my heart even more to get a better picture. That was not fun. I liken it to being in the electric chair, though I know it is nothing that horrible. The problem was they couldn’t figure out all my issues as I have three different ones and they were all doing different things. So…they had to keep stimulating my heart..240 bpm.

This is hard to take for hours let me tell you; on top of that the nurses had a shift change in the middle of it as it was taking so long. Seriously! So a parade of nurses left and arrived (new coffees in hand). The second shift seemed to have little interest in my mental well-being and basically huddled in the back of the room unless called upon to add more drugs to the IV by the doc. By hour three I was so scared and exhausted. The doc came to me (my head) and told me they were having trouble pin pointing the exact problem but she thought they were getting close and I needed to hand on a little longer. I agreed but I started to cry, quietly. Not one nurse offered her hand or a kind word and all I wanted was to hold someone’s hand.

Finally, the doctor came to me and said they had determined the problem (I had been listening to them deliberate over this for hours so I sure hoped they had it right). It was AVNRT but it was unusual as the conduction went both directions as opposed to only one. The extra fibers were also close to the AV node so she warned me that there was a chance I could end up with a pacemaker. Then she asked if I wanted her to burn the site. YES YES YES just kill it please!

Finally…sedation! For the first time I got enough drugs to relax and I liken it to lying on a beach in the sun. At least that is what I convinced myself I was doing. They did 13 burns and I must admit I never felt any of them. I did feel as though I was at a football game though from all the encouragement and cheering coming from the attending physician as he called out to the doc doing the burns! They did have to bring me back a few times and stimulate my heart to see if they got it all and of course they had to go back in and burn some more..In the end…they said to me that they were very happy with the results and were 99% sure they got it!
WHEW!

The next thing I know the doc is pressing on my groin (I never felt the catheters coming out) and leads were being yanked off me. All of a sudden I was on the express tour out of the procedure room. I think because it was 5:30pm and everyone wanted to go home. Everyone disappeared and the next thing I knew I was wheeled into a ward with lots of other patients. Sometime later my sister showed up. Nobody had come out to tell her I was done and she was left sitting all alone in the waiting area with no clue what was going on.

The next part was not fun…the waiting for hours on your back so your groin doesn’t bleed. Before the procedure I was told I would be sedated to make the wait tolerable…NOT happening. The nurse told my sister that they don’t sedate people just so they can sleep. My back was killing me, right between the shoulder blades and my chest hurt. I was traumatized by the whole thing and in mental shock and completely distraught. I was happy it was over but I had had it. I needed to move and I couldn’t. For an hour I lay there complaining about sharp chest and back pain, right between the shoulder blades. I figured it was from having to lie in one position for so long, plus the fact that I had been so tense through the procedure but I started to wonder if I was having heart issues. Your mind tends to play games with you after years of unsolved heart problems. My sister went to fetch a nurse who came back with two Tylenol 2s which of course I had to swallow lying down. Considering the fact that I hadn’t consumed food or drink in 18 hrs, the pain medication didn’t sit very well in my stomach. Needless to say, 20 min later my sister was off fetching a bucket (no nurse in sight) and I threw up all the pain meds. That did not help the laying still so my groin wouldn’t bleed.

As I was in the process of throwing up, apparently the colour of white washed walls, the night-shift cardiologist came to see me. He took one look at me and ordered a chest X-ray and echo to make sure there hadn’t been any complications post procedure. He told me that I had a very complicated procedure for somebody who was supposed to have a simple ablation but that he was positive the team had fixed the problem. The doctor was kind and took his time telling me what to expect including possible fluttering that would feel like the start of arrhythmia but that wouldn’t amount to anything. The team had said that I wouldn’t know for sure for at least 2-3 months whether the procedure had worked or not.

After two and a half hours they let me sit up in bed, I think because I was complaining so much of back pain. Immediately I started to feel better. I am not a back sleeper by nature so spending that much time flat on my back was just too much for me. They took a chest X-ray (great even more exposure, lol) and did an echo at my beside and everything showed clear which also put my restless mind at ease. After another 3 hrs they finally let me leave.

I must say the team of doctors were very good but the nursing staff seemed very absent. I find that unusual as it is mostly the nurses who normally help to make you feel calm and safe.

That night, at home, I slept restlessly but without arrhythmia. My heart rate was faster but even. In the morning I felt as though I had been hit by a truck or had run a marathon. It is hard to explain except I felt “heart” exhausted. I also started to sport a pretty mean headache that all the Tylenol in the world couldn’t seem to ease. My sister was a great help with my 22 month old, so I mostly sat and rested. My groin was sore, nothing like a C-section, but tender to say the least as was my collarbone.

Day two post surgery and I had such a bad headache I thought maybe I had a blood clot somewhere. I visited my family doc who determined that all appeared to be functioning normally. As it turns out it must have been dehydration and stress because I made a point of getting as much fluids as possible into me. By the end of the day my headache had turned down to background pain. I did go grocery shopping with my daughter and my sister but I discovered that pushing the cart through the snow and in the store was too much for me as I started to get a few chest pains and felt very fatigued.

I took it easy for about 7 days and then started back with long brisk walks. I was very curious to see whether the arrhythmias would come back. To my joyous relief, no arrhythmias, even at a brisk long walk. I did get stabbing chest pains that lasted for about 10 minutes which bothered me. I was thinking, “Darn, now the chest pains are back”.

So here I am today a little over a month since my procedure and I must say I am thrilled with the results so far! I did have those stabbing chest pains on and off for about a week after the procedure and they still come very infrequently. I found when I first started to up the workouts my heart rate would elevate quickly, yet without turning to arrhythmia. My doctor told me that often after an ablation the heart becomes “sensitive” and will beat faster upon request of work. I am happy to say that I am back playing competitive volleyball twice a week without incident thus far. I am back doing kick boxing workouts (30-40 min) a couple times a week and going for a few long brisk walks a week. Sometimes if I really get going on the V-ball court I get a “tight” feeling in my heart so I slow it down a bit. I think I need to let it get fit again.

Just in the last couple of nights I had a SEVERE case of food poisoning with violent vomiting etc and that would have spelled disaster with my arrhythmia before. Not one beat out of place even though I became terribly dehydrated.

I am cautious to say that it worked for sure but it is looking good for me so far.

All in all, It was a very stressful and yes, scary procedure for me as I tend to be a bit high strung to begin with but I am thoroughly thankful that I decided to go ahead to do it. I feel that I am slowly letting go of some of the “heart” anxiety I have lived with for so long. I do still have two problems electrically they could not fix at that time. One is extra bundles of cells that cause extra beats in the atrium and the other is the AV node problem of dropped beats. Since the ablation I have only noticed dropped beats twice and the extra beats I have only noticed a couple of times also. Now that I know neither problem is life-threatening I don’t sweat the “small” stuff anymore. I can live with the very occasional extra beat or missed beat in comparison to the completely horrible AVNRT!

As for unexplained chest pain….that is the next frontier.
Holly

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22 replies. Join the discussion

Omg girl.. You are my hero!!!!! You made it through all of that and im to chicken to have a quick angiogram to rule out heart disease. I must say i know what you felt with that "heart exaustion" After every nasty test i had a couple months ago i had that to. But your back!!! You get to do only what i beg to do.. WORK OUT! I have been an areobics instructor for 20 years and in the past year cannot do to shortness of breathe. So far only diagnosis is a Left bundle branch block. I have to do further investigation to make sure i am not waiting for a bomb to explode, but have been thus far super chicken. Im soooo glad you are doing well through all of that. HOW SCAREY was 4 hours of that!!! Omg.. thats insane, but im so glad its over for you and that you took control for your own well being. Good for you!!! :>
Hugs to you!
Deb

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"Just in the last couple of nights I had a SEVERE case of food poisoning with violent vomiting etc and that would have spelled disaster with my arrhythmia before. Not one beat out of place even though I became terribly dehydrated."

Well Ms. Holly, if you are kick-boxing, playing volleyball and breezing-ish through severe food poisoning (which can quickly put a heart patient at high risk)....it seems you've gotten the big bad beasty under control. What a huge relief it must be to rarely experience the dropped beats, extra beats that make you dizzy and wobbly (or do me)!!

That was a long tough day you had. Wish it could have been less prolonged, more heavily sedated during and after. It is always the extreme dehydration that is the hardest for my body to recover from after procedures.

Glad you shared with us. Your situation was complicated and may help someone here. We need to hear from young women who were very active before and after heart procedures, etc. You've done everything right!

You're inspiring me to try to push a little harder!! Wonderful you are getting your life back Holly!

Jaynie in Virginia

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Wow, the care you got was not the care we gave for electrophysiology patients where I worked. I was always happy to medicate pain and anxiety during the bedrest period because it is so difficult for people. The doctors generally ordered some IV and oral pain and anxiety meds. In the future, I suggest you request medication for pain and or anxiety and insist they call the doctor if it is not forthcoming.

After a big ablation procedure, people usually have burning pain in their chest. Doctors where I worked often gave Toradol (an IV NSAID) as well as opiate pain meds.

Glad you are feeling better now and the procedure seems to have been successful!

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What a day! I guess I should not be as apprehensive...or should I be more apprehensive about having an ablation.
Glad you are doing well now. By the way, you are a very good writer.

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Wow...That sounds like a horrible experience! I'm with Jaynie in amazement that you are kick boxing, etc. How wonderful! I had CABG surgery a few months ago and they could never get heart beat to regulate among other complications. I had a Wonderful Electro Physiologist Dr. Jody Horwitz (sp?) at Medical City in Dallas. I will admit going into the ablation was scarry. I'm never sure being awake going into surgery and getting yourself onto the table is a good idea. I did like knowing what they were doing pre surgery and my group was excellent about explaining all about the GPS mapping and the need for all the "freezing" large patches they were putting all around my upper torso. Nurses were great about explaining the need to put very cold IV to cool the lazer for the burns and they kept me warmed with heated blankets at least while I was awake.

Anesthesiologist was very comprehensive about the need for me to be completely still during mapping and the lazer treatments to stop the electrical pulses in my heart. Kept a running joke about the Propophol he would be giving me and assured me it was very safe when used by a competent anesthesiologit. After the team had me arranged on the table with all the huge mystery machines around me I was off to sleep for the next 4 plus hours. I never knew another thing until I was in recovery then in Cardiac ICU overnight.

I completely agree that laying on my back because of the groin incisions was the worst of the whole procedure. I was packed with pressure bandages on both sides of groin for a few days. My worst problem was the inability to get warm following the procedure. My body was just so cold inside and out it was hard to get me warmed back up.

Thankfully, I didn't have any difficulties post procedure and I was monitored for twenty four hours post ablation before they agreed to let me go home. That was 18 days post CABG that started as just a Cath with the possibility of a stent.

I was also told that it would be three to six months before we would know if they got the total problem taken care of and I am on Sotolol during that time.

I am a little horified about your experience Holly but I am so thankful you made it through and can share the experience with us. I am certainly with "yarnkitty" in that I would make sure that I had an agreement with the doctor and orders in advance to have meds for pain and anxiety if I ever have to go for another abalation.

As a side note, I was given a very colorful map of the electrical system of my Right Atrium specifically and of all of the "current" they "turned off" i.e. lazered. My doctor was very up front about possible complications and the potential need for a pacemaker as a last resort. She is amazing and I actually look forward to those cardio medical visits as she is very comprehensive about answering questions and makes sure I understand her answers.

Ladies, if any of you have an abalation with the GPS mapping I hope you are as lucky as I have been to have a very positive and almost pain free experience. Other than the science I learned about while they were preparing me, this cath lab was similiar to the experience I had while awake in the typical cath lab before they began a simple catherization procedure. If you have had a Cath or Angioplasty you won't find this procedure (as I had) unfamiliar or frightening. I say this because when you need a procudure you already have enough anxiety about having a heart problem...I know all of our experiences are very different but I can honestly say I won't have any more anxiety about another abalation than I will a catherization. I hope my experience will ease some of your minds if you need this procedure.

Holly, I am so sorry you had to have such a frightening and painful experience and I thank you for sharing. Do you mind my asking where you had your surgery?

Hugs and all best wishes from Texas, Terric

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Thanks for sharing your experience in order to help others.I am glad it appears the mapping etc. worked for you. I wanted it done but had too many faulty areas for them to deal with.
As to the chest pains- it seems whenever I have anything done to my heart-ultrasound,MUGA or whatever,I experience chest pains for about a week afterward. Seems the heart has a "trauma"memory or something like that! Normally,I never have chest pain(unless the dog pulls the leash too hard on my ICD side)...so who knows.
Shamal

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HI HollyHeart!
I enjoyed the humor in your relating the story of your ablation. And I must say I identified with much of what you went through. Although the room that I had all of this done in was top notch as I went to Cleveland clinic. Actually I was afraid to relate too many details of the procedure because I was afraid telling too much of what I went through would intimidate others who would have to go through the same thing.

I am surprised that they left you sit up after 2 1/2 hours. It took 9 hours in the ablation room and then they made me lay 7 hours afterwards without moving. Actually it should have taken 6 hours but after the first hour I moved and the insertion site started bleeding so they started the 6 hours all over again. I had the procedure at 8Am and had to sty on my back without moving my legs until 12:00 midnight. Not a fun day by any means.

While I never want to go through it again, I am very happy I did have the ablation as I now have my life back. I an exercise, ride bikes and walk wherever and whenever I want to. I feel terrific! So I am happy for you that it is over and hope that you continue to feel well.

Stay well! Mary Ann

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I wish I had known about this site before I had my ablation in 2001. Like you, I found it to be strange in many respects and nothing was explained. I had to travel three hours for the procedure. My electrophysiologist didn't even change out of his suit or scrub in, and he stayed behind the computer the whole time. A technician actually threaded the catheters. I was essentially ignored. Some drug I was given made my nose itch crazily, and despite my asking someone to help I didn't get an answer. So, I tried to scratch it myself - that got everyone's attention. A nurse dabbed at my nose with a washcloth, not really helping. After what seemed like forever, they told me I was done and took me to a bed where I had to lay flat for six hours (no meds like you, and I had to pee very badly). The nurse told me I had to spend the night (the first I knew of it). The next morning, the electrophysiologist told me I was good to go, to take an asparin a day and go back to my cardiologist at home. That was it. No warning about pain, flutters, why my heart rate was hovering around 100 bpm for months after, etc. I live in fear my SVT will come back, as I continue to have flutters and short arrythmias that feel like little waterfalls. Nothing that I can't convert back, though. Eleven years later, I'm still on Metoprolol for the arrythmia.

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Hi! Glad you getting the freedom to do so much of what you were doing before. I have not had an ablation - At this point I don't think they will do one, and after hearing Molly - don't think I want one. Molly - glad you had yours done - but sorry you had to go through so much. Pray that it will work for you. You have a lot of years ahead of you.

I've had different experiences at different hospitals and different doctors for different reasons. Where I had the TEE Testing looked like what Holly described - at least somewhat. Everyone there was in surgical garb. The first time, my regular cardiologist did the test. The results were bad enough that she ws thinking heart surgery ASAP. I had joked around with the nurses (male) who were inserting the IVs. Big mistake! I told them that I was good, even with a 14 needle. The 1st one couldn't get my vein. Because of the cancer, they only have 1 arm to work with and the veins are bad. That's putting it mildly. The 2nd one decided he would give it a go. He poked and prodded and he actually hit bone. Pain for months afterwards.

I went to have a f/u Cardiac Cath - was in a totally different world. My husband and I were picked up in a limousine and driven to the Hahnemann Cardiac Care Center, which is attacted to Hahnemann hospital. It was a state of the art facility. I was loaded with prednisone and benydryl because of my allergies to the dye. I asked to go to the bathroom before the procedure, they said wait. They wheeled the bed down the hall and said there's the bathroom - walk across the hall when you are done. I did as I was told. The procedure room was big and beautiful, at least as beautiful as you can get one. I laid down on the table - looked up and there was a palm tree painted on the ceiling panels covering the lights. On it were 2 coconuts that looked like they would fall on me. It totally distracted me and took my mind off the procedure. AS I was going under, I could hear the doctor giving instructions to the nurses on how to draw up the epinephrine to have it ready, so it would have the least amount of effect on my heart. I could hear everybody, but felt no pain. I told the nurses how impressed I was with the doctor. Came to find out he was the key person who designed, and along with a few other cardiac doctors had it built. They said he is true genius.

The next year another TEE - time for surgery - heart had enlarged on the left side of the heart, especially the atria. It was in the significant range. I did not joke. The environment was the same as the first one - just looked like a hallway with curtains around - at least they have a nice changing room. Another heart doctor did it, because she wanted a second opinion.

It was 5 months before the surgery was done - Nov. of 2010. (I was out before I got to the operating room). After the surgery the heart took off all over the place - in come the EP doctors - about 6 of them consulted with each other - a PET Scan was ordered - no sarcoidosis of the heart. That would have meant a defibrillator implant immediately before I could go home. Instead they tried to induce the afib - the cathetar through the groin. The waiting room was nice enough - clean - sterile - they did wear scrubs - From there I was taken to the procedure room - Not much to speak of, but OK - had to stay awake, with minimal sedation while they tried to provoke my heart into doing something - thjey also gave me a choice of music to listen to. Kept checking to see how I felt and they backed off when it started to bother me. They were afraid of pushing it.

Once, I told them that the chattering of 2 of the staff was annoying me and he had them quiet down. When nothing happened, they decided to put a heart event monitor under my skin, sitting right on the upper portion of my breast. All of this took place at the University of PA Hospital. I was given detailed information on ablation when I was discharged. The EP doctor I see there is very nice and answers all my questions. 2 weeks after I was out, I had to go to my local hospital and needed to be cardioconverted. I'm off the amiodorone - and am under control now with just 75 mgm metoprolol twice a day. I will not go back on amiodorone, because I did wind up with some tendon and ligament problems. NO rupture, thank God - just finished PT this week. See what my heart doctor says when I see her in April.

I will keep praying for all my heart friends. Blessings and hugs! Great-Gram

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Shabar,

"After what seemed like forever, they told me I was done and took me to a bed where I had to lay flat for six hours (no meds like you, and I had to pee very badly). "

You and your heart were put through a great deal too! Glad you got a long stetch of relief afterward.

If you find yourself there again, you might want to do what I do....always insist on a Foley catheter. It doesn't get inserted until you are actually in the lab to avoid hospital-acquired bacterial infections. It isn't fun but there is no way my system can deal with the steady saline IV input. I had to go 4 times during the 2 hour lag time between IV stick and actually being taken to the cath lab...then the cardio kept us waiting another 45 minutes. The procedure lasted about 45 more minutes I think. Then 6 hours flat-ish in regular room. (Foley catheter is just a sterile tube inserted into bladder so that urine is collected in a disposal bag. It is a massive relief to have it in position so you can concentrate on getting through your procedure and recovery stages.)

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Martzi-
They never even offered the option of a catheter, and in general nothing was explained and I didn't know enough to ask. I hope I don't ever have to go through it again, but I will know the right questions to ask if I do! Thanks ~

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Hi Shabr & Martzi,
Bet you are glad that procedure is behind us and hopefully we'll never have to go through that again. I am surprised that he doctors didn't have the nurses put a catheter in you so you wouldn't have to worry about going to the bathroom. As I mentioned earlier I went to Cleveland Clinic for the ablation and when I got to the ablation room the very first thing the nurses did was to put in a catheter. They said that it would be a long haul so putting in the catheter would solve the problem of having to be in agony because I needed to go to the bathroom. The nurse put it in at 8: AM and didn't take it out until I was able to get up at midnight. By that time I was going crazy having to lay 16 hours without moving but at least I didn't have to worry about going to the bathroom.

Hope all of you that had to have this done found that the procedure was successful as no one wants to repeat that. But again I am glad that we live in an era where they have medical advances to address these issues.
Stay well !!!
Mary Ann

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Marob (Mary Ann) -
Thanks - as I look back now, there is so much I didn't know and questions I didn't even know to ask. Granted, this was eleven years ago, but I had to ask what my options were because the side effects from the medication were so debilitating and the PSVT episodes were so scary. I remember the EP telling me about the ablation that they did for people who really needed to get rid of the PSVT - like pilots, etc. He didn't include me in that category, but I told him I was having a hard time working. I traveled three hours to Spokane Washington to have the procedure. I had a wonderful dinner the night before (I remember wondering if it was my last, funny what you remember). The next morning, I had to be at the hospital at 5 am, then sat in what looked like a classroom in only a gown and a thin blanket for three hours. When I was finally ready to go find a nurse to ask what was going on, I was ushered into the 'surgery area' as previously described. I was hooked up, IV'd, and then the nurse got ready to shave my groin for the catheter. I must have looked surprised, because the nurse asked me "didn't your doctor tell you that we were going to do this?". I said no, and at least then the nurse told me what all the equipment was. I didn't even see the electrophysiologist until after the procedure was done.
I later learned that the PSVT can come back, and I am still on the metoprolol. I think I would have still had the ablation had I known, but it would have been nice to have been treated as an intelligent being and been fully informed. I wish the Inspire site had existed then, or I had known about it then. I was diagnosed with kidney disease last year, and this site has been the only place I have been able to find for accurate information and other people going through the same problems with the same questions I have. It's a great place, and makes me feel like I am able to exercise some control over my health or at least make informed choices when I can.
- SharBr

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Hi SharBr!

I think that sometimes it is great to know exactly what is going to happen and other times, not so much. I didn't know anything about ablation but I did google it and learned a lot about the procedure. But on the other hand I went to Cleveland, which I hadn't originally planned on going there. As it happened I went out to Cleveland 3 months prior to my Ablation to have a Mitral valve surgery. I was gutsy if I have to say so myself. I researched the doctors in cleveland and found out which doctor does the most Mitral valves at the Clinic. It happened to be Dr. Marc Gillinov. So when I wrote to have this done I sent a picture of Dr. Gillinov and wrote across the bottom of his picture, "This is the doctor that I want to do my Mitral valve surgery". I couldn't believe it when I got a phone call back saying that Dr. Gillinov would be performing the surgery. As it happened when I went out to have the surgery done, they did all kinds of tests and at the end of this series I was on my way back to our hotel my cell phone rang. It was Gr. Gillinov's nurse calling me back for an appointment with Dr. Gillinov only to have him tell me that he couldn't do the surgery because he felt that my main problem was Ventricular Tachycardia. I already knew that I had this and was taking meds for it.
So I came back really dejected as this was to be my salvation as far as chest pains and difficulty breathing upon exertion. He was really great and explained all the reasons for not doing the surgery. I may still have to have it done in time but not now.
So after trying other meds, I finally said to my cardiologist, I want an ablation! And that's it! so when I asked him which local hospital I should go to, my cardiologist said, Cleveland Clinic. Number 1 he knew that it was going to be a difficult ablation as I had many, many types of PVCs and number 2 since Dr. Mandeep Bharagava ordered so many tests he knew my heart better than anyone. He is an ectrophysiologist and would be the one doing the procedure.

So we traveled 6 hours and prayed that we would not encounter snow as the lake effect snows in clevelend are legendary. We went out, no snow, and could not have been treated any better. All the doctors and nurses plus anyone having anything to do with my procedure came into my room as a group and explained everything and asked if I had any questions. It was an over whelming experience. I have never had the medical personnel treat me that well.

The absolute worst part of the ordeal was the injections before hand to numb the area. Since I would not get any sedation the doctor gave me a numbing shot in both side of my groin without sedation. That had to be the absolute shots I ever had, ever worse than getting shots in the knees for arthritis. At any rate for 9 hours I lay on the table being reminded constantly not to move as they would have to start mapping all over again. I have to say the second worst part of it was the preparation. A nurse doused me with iodine from under my breast almost to my knees, soaking wet,m he left me to dry for several minutes. Then he came back again and did it all over again -left me dripping wet and shivering. Would you believe he came back again and repeated the same procedure.
By that time I was shivering so bad I was shaking uncontrolably. Good God. Keeping germs away is one thing but this is rediculous.

So then somewhere in the 9th hour I hear everyone calling my name and giving me orders - open your eyes, stick your tongue out, wave your hand. I heard them but couldn't move. They are shaking me and I cannot respond. Talk about scaring the hebejeebees out of you! I kept praying, Good God please don't take me now! I was literally frozen in place. Couldn't move, couldn't talk but I could see and hear. I was expecting to see the light and the tunnel that you hear about with near death experiences. I was awake for most of the time I was in the abaltion room but I think they sedated me to do the actual ablating and maybe gave me too much drugs. I heard the doctor tell the nurse to cut back on the drug (sedation I assume). Obviously I came out of it OK but was I ever scared until I was able to talk again.

So would I ever go back for it again, I hope not but if it meant the difference between having a normal life or gpppoing through what I have been through the past 5 to 6 years. I guess I would but I would again travel 6 hours to Cleveland again.

Sorry I didn't mean to be so long winded. Thanks for letting me vent!
Take care! Mary Ann
PS if you ever check out mitral valves on th Cleveland clinic website you will see Dr. Gillinov. Really cool doctor

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So glad you've had a good result, Holly! I was also an athlete who struggled with exercise induced Vtach, and was unable to run for three years. After my ablation this past September, I feel like I got my life back! One of my EPs was very hesitant to make any promises about whether I'd be able to run again after ablation, because "running after age 50 is very hard". Well, I'd love to tell him he was only half right...yes, running is hard after age 50, but yesterday I ran a very hilly 10.2 mile loop in the park. Before my ablation I couldn't run for 2 minutes, much less almost two hours! It was all worth it, in my humble opinion!

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Sounds like a rough experience....not like mine at all, although the second one wound up with a puncture and that's another whole drama. I hope the extra beats don't come back, but if they do, and if another ablation is recommended, if I were you I'd consider getting a second opinion and also checking into getting the procedure done at a different facility. I had excellent care both times....both times I was completely out...totally under...the second time was a major crisis with the puncture, which probably came about because the structure of my right ventricle isn't completely normal and because the wall was unexpectedly thin...so don't worry about that, but it can happen. But really, consider getting a second opinion and going to a different location -- that vomiting up the pain meds is dangerous for the groin area....they kept giving me anti nausea meds when I felt the slightest bit queasy...It's not uncommon for the beats to come back after a few months...mine have and at this point two electrophysiologists have recommended that I not do another ablation since it obviously isn't working for whatever the problem is which the docs can't figure out. But you deserve much better care in my opinion...

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esateen,

I was wondering what your actual dx was (ideopathic vt, arvd etc..)? Did you have an epicardial or endocardial ablation? I too recently had a VT ablation for tachycardia. I am also a life long athlete/runner etc... I was very apprehensive about running again but recently started slowly at 2 miles every other day. So far so good with no real episodes. Some discomfort and short runs of vt which get my attention but no crazy sustained vtach. I am hoping to be in your shoes...nothing crazy, just enough to put out the fire if that makes sense. It's posts like yours that give many of us hope. Sorry to pry, just like to hear success stories...it keeps hope in my heart that I can in some way put this in the rearview mirror.

Hollyheart...I am so happy to read that your experience produced a positive result. It's a tough thing to go through but the juice is often worth the squeeze!

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Thank you so much for sharing in detail your experience with electro mapping and ablation. I felt your pain and anxiety all throughout my read of your post, and was so happy you are back living life actively again. I pray it will be a permanent remedy. My journey with a-fib and svt is just starting and it is very frustrating. I find this site to be such a wonderful source of information and support. Thank you again for sharing. It is so good to hear a success story.

Karen

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Hi HollyHeart...

Listen I haven't been on the site in a while until today where I responded to two NEW friend requests, anyway, In happen to read your horrific experience. Sounds similar to mine but worse. I live in NJ but went to UPENN and a Dr. Marchlinski supposedly TOP in his field for ablating multi-focal PVC's and Atrial Arrhythmias' as well, like my PSVT and IST, which I still wound up with post ablation unfortunately, as well as, with the interpolated and occasional yet ALWAYS returning short runs. These would last sometimes a day, week, or month and would vary as far as frequency of them per day. Oddly enough, they also would go away for several "months" then would return either only a few isolated or interpolated PVC's and/or pauses in an hour or a day (when I was lucky). On the other hand this last onset started up a few months ago, although they haven't totally went into remission, they have decreased.

I notice that since I have been having GI issues and "Severe Bloating" 'NOT" GERD, but pain/distention and inability to have a bowel movement or pass gas, as if it were stuck in my intestines. I have been through EVERY dx test, Colonoscopy, Endoscopy, Capsule Study to see the void areas were the previous tests Im mentioned can't get to, such as the small intestines.. In any case, nothing was found of course, at least nothing GROSS that would jump out at them on both the CT and MRI of the abdomen 3-months apart. Biopsies were done on the first 2 procedures I mentioned and NO H-Pylori nor bacterial growth, polyps, cancer/masses were found. This, mind you, was after going to the 3rd GI doctor here in NJ. The last one put me on a very expensive drug called Rifaxamin. He said just let's try this in case you have a bacterial growth that wasn't detected? Anyway, I did it seem to help but as luck would have it , the cramping , pains, and most of all Distention that made me look pregnant, was back. I took this anti-biotic again and I think it was just a coincidence that it really helped. I have a bowel movement by doing what was suggested to me, and I tried everything on the market and some prescription meds. as well. I found that "either" drinking warmed prune juice 3 x a day or mixing 2 tbs. of bran and prune juice and taking that, helped me go but NOT everytime. So, I think that may have been a result of what I ate that day/night that would cancel out the effect of that cocktail.

Anyway, I don't think I am lactose nor gluten intolerant NOR do I have celiac OR IBS..? At least that is what I am told by these 3 so called TOP docs. Top docs my A**! So, I am trying to deal with it on my own and refuse to go to the ER whom was also NO help to me at Morristown Memorial Hospital In NJ. I am tolerating with the flucuating stomach distention and recurrent nausea/cramps and I am more concerned about the scary arrhythmias returning and it always seems to be upon awakening and almost ALWAYS after eating, which MANY people in this forum will tell you happens to them as well. I KNOW that my Vagus Nerve is somehow involved in MOST of my GI issues and even may play a role in my arrhythmia episodes, as it too almost "always" accompanies or precedes my indigestion. When are the doctors going to wake up and realize that in some people it may be Dysautonomic function (The Vagus Nerve particuarly) causing many of our symptoms, at least mine and many others who posted the same or similar problem I have. Even if there is a "lesion" or foci in OR in my case "epicardial" on the surface of the heart OR other more common areas located in both the left or right sides of the Atrium or Ventricles. Wouldn't it make sense that some sort of disruption of the vagus nerve that innervate areas of the conduction system or simply an increase in Vagal tone, as we all, can induce PVC's OR IST, (Inappropriate Sinus Tach) OR the various other forms of SVT? Do we need a 2nd ablation if the first one fails by a supposed TOP doc or are they unnecessarily causing RF burns which can lead to ICD's, Pacemakers and really just MORE heart scarring? By zapping one area you create scar tissue in another area. It's NOT rocket science you know. That is WHY if I ever couldn't tolerate the onset of these recurring arrhythmias that come on when you least expect it sometimes and with a vengeance and it was proved to me that ablation was the only way to rid me of these intermitant yet disconcerting episodes, I would opt for Cyro instead of RF ablation, as it can be reversed, if they DO burn the wrong area OR damage the sinus or atrio nodes. I will also make sure that the doctor HAS a track record of success rates. It's ALL about the skill of the team and Doctor doing the procedure, where the outcome could make ALL the difference in the world. And I know a few people that didn't require "Multple Ablations" and in the end still had their arrhythmias return, as did I, except I will say for the PSVT, it seems. I did have to REMAIN on Tenormin and/or Toprol-XL 25MG BID , otherwise I would get a high resting pulse rate which made it difficult to sleep, especially when you already have sleep issues and mild to moderate sleep apnea. That's the long and short of my story.

As far as my experience at UPENN that is a whole other story to tell. I almost sued the doctor but I had no proof or merit to do so, as it was my word against his the convoluted medical knowledge and terminology that would supersede and protect him from my complaint to the PA medical board against him & the hospital for the very expensive procedure that did very little to help me have a better quality of life. Having to stay on the BB's and anti-anxiety meds with their side efects alone, really has it's drawbacks. I was hoping a $50,000 ep Study followed by the ablation would have been more successful and I would NOT have the needs for the meds that just is a bandaid solution at best and ONLY blunts the effects of feeling the nasty runs OR multiform PVC's that can be quite frightening. Oh, and the beta blocker just helps control my rate from going uncomfortably high and my regular cardiologist says after 18 years of my SVT onset, they may also "help" (not stop) the frequency of the episodes.

Feel free to post this as it has been a while since I posted at the site. You will out about my ablation in more detail by going back prior to 2009 of May when I had it "finally" done, only to be totally disappointed with the outcome by supposedly such a prestigious electrophysiologist.

Actor Eddie

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Hi Actor Eddie,
Re: GI problems
I've been there. I just had a PM put in and my electrophysiologist told me that the GI symptoms would likely go away. And, they have!

He said it's a part of congestive heart failure. The congestion extends to the GI track. So, while I don't recommend a pacemaker, it has worked. My GI doctors for years were worthless, just putting me through too many tests, all came back negative.

M'Liz

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